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angelasmom (@angelasmom)

Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: 3 days ago | Replies (227)

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@angelasmom

Hi Alejandro Thanks for replying. Where is Dr. Hare and the wound care center? Would you recommend them to other LVers? Do you know anyone else with LV? You know I had skin grafts too! When my LV had slowed down I had not had new wounds for a year but 2 little ones were just hanging on refusing to close for 16 months Dr. Phillips at the Boston Medical Center put Apligrafts on me. lab grown skin made of stem cells. No problems since!. I found my cause of LV was cryoglobulinemia. That’s when a blood antibody that only separates out of the blood in cold weather,cryoglobulin, causes clots. It’s not that LV has no known cause. It has multiple contributing causes sometimes different for different people. If you are interested I will try to post a article listing the many possible causes. Some have been able to find their contributing factors and helped control LV. Article is also posted on Inspire.com under “Causes of Livedoid Vasculopathy. Angelasmom

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Replies to "Hi Alejandro Thanks for replying. Where is Dr. Hare and the wound care center? Would you..."

hi friend….found this site while looking for any new info on LV.

I have widespread Lived Reticularis or vasculopathy whichever doctor I see< It was originally diagnosed by “GOOGLE SEARCH” by my Maine MD ” that is what it looks like? I could not believe he did not sent me for a skin biopsy to see if it was Livedo Racemosa? I am al mottled but my face sometimes turns a pasty white my family said “death mask” The only lesions I have had are solitary scalp lesion that did heal for 9 years biopsy “necrotizing Folliculitis” with Staph aureus but the Derm had to finish removing sutures due to pus and pain that shot down inside my head just hustled me out the door ” see a Rheum” My beta2 Glycolprotein was slightly increased he said take baby asa. I am tired of these doctors who do nothing but shove you the door and you have to care for the smelly infection your own. I had 2 primary care doctors in lady lake and Ocala and both needed up sending me to shrinks , I said I will go but all i am going to is complain about the shooty care I have been receiving with no body listening to me. The 1st shrink almost attacked me across from his desk when I mentioned that doctors should confer with other doctors that may have more knowledge as medicine is always evolving ” How so you think we doctors are not trained well enough the medical field” I said that is not what I am saying , I am saying that if you do all these test and everything is negative , then why is bad to team up with others as they may know more knowledge” Then he put me down as a RN and I told I am no longer to work due to my misdiagnosed , botched surgeries in Maine but when I did work I always kept up with knowledge in which ever speciality I worked, like i would not give a drug I did not know what it was for and adverse reactions etc.. nor would I care for a diagnosis I was not familiar with as the hospital I worked had a good medical library and there were nurses more experienced in caring for whatever so I would knowledge myself. He threw me out and said ” i do not want you seeing Dr Cai . I said I already made a change but that was no better as DR Fisher thought I diagnosed my self with MGUS,anemia, skin changes and he had all my records and each time I went to see him he would stand over me rather than sit as he usually did , and argue with me what Moffits told me and what he thought he read. I was right on both things but due to my crying due to my symptoms worsening like blood in urine ” we took a urine sample 2 months ago and it was normal , so he sent me to a shrink DR McDonough in Tavaras 1 hour drive away. I got there and he said ” I do see Hypochrondism here! I see a patient that is visibly ill and none is listening to her complaints” I said DR Fisher thought I was a hypochrondiac and he shook his head yes. He said I will need to see you 1 more time to conform and write my letter. I think doctors like that need to be reevaluated for competency, oh yes the scalp lesion that would never heal a Ocala primary to my surprise diagnosed me as a “PICKER” it is no wonder i get no where with anyone, only sicker and power quality life, I would not treat a animal like I have been treated and insulted by doctors. The solitary lesion was finally dx as SCC and removed the said got it all but within a month a new lesion started next to suture site and again like a crater like everything surrounding lesion is being eaten away, so I do not know what is going on as he mentioned Melanoma and Pre-SCC ?? Never heard of Pre SCC. I know here we go again with a sore scalp

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